Navigating Navelbine
Comments
-
Thanks everyone for your positive and thoughtful input! It does make me feel a bit less "cranky" and nervous. While my TM's have traditionally been a good indicator that something is "stirring" maybe, maybe this was fluke b/c the jump was so crazy big (and I did have an UTI the week before). Not going to panic and I'll hit the Navelbine chair again this Friday with the best of thoughts. Jenn- thanks for the "heads up" or rather "bottoms up" in this case LOL. So glad you were able to get some relief.
0 -
So I have just started on Navy Bean ( I agree it is easier to remember) Yesterday was first infusion of any IV Chemo since dx in Oct 2016. I was on Ibrance from July which kicked my @SS. Fatigue, loss of appetite and shortness of breath. TM went from 289>2800. Had CT of chest everything stable, showed liver mets??????? Never had before I started on Ibrance and from a few other sites saw ladies on Ibrance getting liver mets.....gets me thinking.....
Today I feel much better no fatigue my head has a lot of energy and things I should do. I am not going to be spending time on the couch like I did with Ibrance. I work full time and am a single lady with no spousal support so I must move on.
I may just be lurking but would like to see that this is an "easy chemo" as 2 MO and nurse navigator have suggested. So dont really know my schedule as yesterday was day 1, my MO was on vac, saw his partner who said he would do 2 weeks on 1 week off, but we will see what my reg MO says and my #'s.
good luck to you ladies, and this is the best site for sisterhood.
Sherry
0 -
Welcome, Sherry. Most people have had a very easy time of it with Navelbine. Your chances are great of having an easy ride, as you've been on a chemo break for about two years, right?
I think those of us that are heavily pre-treated are prone to more difficulties. We are a little more tired, etc.
I was doing three weeks on, one week off. But, my bone marrow seems to be hinting that it would prefer two weeks on/one week off. Every time I get to the third week, my whites are really low.
0 -
thanks Blaine, I have a long drawn out drama about DX that I wont go into. Long story short new MO waited too long to start me on chemo should have been done by Jan 2017, 13 pos nodes. She started me on Arimidex in Feb. Had kidney mass that she never explored, consult with RO found and saved my life Changed to MO I have now as he would have started chemo etc in Jan. SO went from Arimidex to Ibrance and have had this lovely port in my body since Jan 2017 with no use until Friday. Went in monthly for port flush. I am also taking fasoldex injections each month
0 -
Sherry,
Wow. That sounds like a close call! It seems like Ibrance can go two ways: 1) It works great, and the patient gets to stay on it for a long ride. Or, 2) Hello, liver mets and tanked white cells. I've seen more of 2 than 1.
Didn't explore a kidney mass? When you get the time, and it doesn't make steam come out of your ears, please tell us the story. The data is good for other sisters and the few misters who are learning all about this stage 4 stuff.
My only advice is to make sure that the poop train leaves the station every day. I'm still in quite a lot of pain from some epic constipation - and I thought I was keeping up.
All the best,
Jennifer
0 -
https://community.breastcancer.org/forum/135/topic...
here is my story. Thanks for letting me write this out
0 -
Welcome to the thread, Sherry. I hope Navelbine works very well for you. I’ve only been on Navelbine & Herceptin combo for 2 1/2 cycles now, so I’m still getting adjusted to this new treatment. It has not been easy for me at all but I also started this treatment in a compromised state, so my body had some major work to do.
I’m still having constipation with this chemo, so be sure and address it early as Jennifer said. It’s definitely not fun.
👋 to the rest of the group. Hope you are enjoying the weekend.
0 -
Hi Sherry- WELCOME!!! Wishing you good success on Navelbine. I'm 2 weeks on and 1 week off. I definitely do better when I get the Navelbine by itself (rather than the week where I also get Herceptin). Wishing you and our wonderful group a great week ahead. Happy Halloween!!
0 -
Fourth month of Navelbine. TMs have gone from 900s to 530 (I've always had high TMs). Scans show stability.
I'm still having that weird and intense right upper quadrant pain. Medical minds are thinking that it is a spinal compression fracture, rather than a gallbladder/pancreas situation. I will be having a MRI to get a better look at the vertebrae situation. This pain was an issue before I started Navelbine.
By the third week of treatment in a cycle, I do have tanked white cells. This last time, I couldn't even get treatment. I think I get pretty tired when I'm neutropenic, but I could be confusing that with being sedated from the pain meds for the RUQ pain.
0 -
Hi Jennifer- great decrease in your TMs! I can’t wait to see my # next week. We need some positive news when we are dealing with all the crappy side effects of this chemo.
I’m getting an MRI on my lower back tomorrow. My back pain has gone on for too long and I need to get to the root cause. I don’t like having to continue to take pain meds and, along with the Navelbine, they really bind me up.
Getting fluids right now - it’s my chemo off week. I continue to have a hard time staying hydrated, so now I’m getting weekly fluids. It only helps for a day or two but it’s worth it.
Waving hi to Fran, Becs and Sherry. Anyone else taking Navelbine? My memory isn’t so good.
0 -
SS,
Had you talked about the back pain recently? Was it an issue before Navelbine? I guess I'm trying to see if Navelbine has a bone pain side effect. What do you think?
Good luck on your MRI. I hope they find out what the heck is going on, and how to fix it. Nope, no transference at all
.Jennifer
0 -
Jennifer,
I first started taking pain pills for my back over a month ago (late September.) So, yes, it was about 3 weeks after I started Navelbine & Herceptin. I didn't have this back ache issue before.
I'm looking forward to seeing what my MRI results are as I really need some back pain relief. Hope your MRI is soon too.
Hugs, Southern
0 -
Off to start my 4th Navelbine/Herceptin cycle tomorrow! Hope everyone is doing well this week.
0 -
Well was not able to get Chemo last week, fever, low whites. He put me on Cipro, seems everyone at work had been sick. So had appointmen today and got round 2. Prayers this goes easier this time.
0 -
Hi all!
Fran - I just started Round 4 yesterday. It seems to be getting a bit easier - finally!
Sherry - hang in there. For me, it started getting easier at the end of Round 3. Hopefully it will be even sooner for you. Know though that there is a light at the end of the tunnel.
Overall, it hasn't been such a good week for me. I found out that my MRI showed mets in the spine. Neurosurgeon says that is what is causing my back pain. I haven't talked to MO since my appointment with neuro today, although I'm sure radiation is up next. Have no idea of timing of it or how many sessions. Also, my tumor markers jumped this week - I'm really annoyed at that! I need this combo of Herceptin/Navelbine to work.
Jennifer- how are you? I guess I can’t blame Navelbine for my back pain now.
Take care all - keep checking in. Always good to hear from you.
0 -
SS,
If you are looking at radiation, it could beat back the rising TMs. I've gotten extra juice out of two protocols that way. Are the spinal mets your only hotspot? I know that the news is hard, but there is a treatment solution, meaning that the pain will soon be a thing of the past.
One bout of rising TMs isn't indicative of a problem. MOs look for a trend. I've actually had the lab mess up one round of CA 27-29, that was resolved the next month.
I agree that the longer one stays on the Navelbine, the easier the SEs seem to get.
I had my MRI yesterday. Man, lying down on that hard surface for an hour messed me up for the rest of the day. It really hurt! Why can't they use a soft surface for people with bone pain? I'll have to bring that up for the next one.
My ears were also ringing for hours, even though they used earplugs and fluffy padding to protect the ears. My techs were great. I didn't even feel her doing the AC stick for the contrast. She was a real pro.
I am curious as to what is next for you. Keep us posted.
Jennifer
0 -
My navybean is currently on hold and will be for a long while. My brain MRI on Tuesday showed significant progression and I feel it. My neurological symptoms are vastly worse (I can't walk more than 5 feet without a cane now) and have been having alarming personality changes. I lived by myself in an apartment in Manhattan for 8 years, now sadly, my parents are helping me pack up my life to move back with them and get a home health aide to help me with personal hygiene and other things (right now, showering, even while sitting) gives me major anxiety. That's a key personality change, I've never had any anxiety or panic attack's ever in my 37.5 of life before.
0 -
SS-So very sorry to hear about your MRI results. It seems like we are both having a crappy week. On a positive note-you all are right-this 4th cycle seems easier in regard to SE's (so hang in there Sherry-it does easier to tolerate). HOWEVER, since the swelling in my right arm has returned (as has some of the discomfort) and my TM's have jumped up once again (this week it really went up)-the MO has ordered a CAT scan for this Weds. and we will "chat" again on Friday to go over the results and discuss possibly switching my protocol (again!!). I'm so damn frustrated-this damn cancer seems to have a mind of its own!
Jenn- Hope your MRI results come back better-we will be praying for you.
I'll keep you all posted.
Fran
0 -
Becs,
I am screaming on the inside so hard. Cancer is unfair. There is no way you should be having to go through this.
I will be pouting in a corner, thinking of you. If there is anything I can provide, please ask. Do you get to stay near NYC? Spouse is back and forth between NYC and upstate NY, if you need anything picked up and delivered somewhere. This is a serious offer.
Wishing I could punch cancer in its face.
Jennifer
0 -
Fran,
My MRI had some interesting results. While I don't have any collapse of the intra-vertebral spaces, it is clear to see that the pain is coming from some mighty moth-eaten thoracic vertebrae. Some of the vertebrae seem to made of household dust and snot.
Due to the scope and degree of the mets, RO recommended that I go for a ten treatment course. It increases the risk of side effects, but RO says that there are several different stages of disease that could be fixed (whatever fixed is in Cancerland) by the ten radiations, giving me longer term relief.
There seems to be a sense of urgency, as I've been pointing at soft tissue as the cause of the pain, and the spinal mets weren't really on the radar. They asked where the pain was, and I would always blame the gallbladder. They'd thump me on the back, and I wouldn't feel any pain.
For a year, these mets have been having a party, while I kept getting scanned for gallbladder trouble (which I may have had in the past, but don't seem to now). As it turns out (learn from my pain), PET/CT scans aren't so great at picking up bone troubles. MRIs are. The difference between last year's MRI and Thursday's are frighteningly impressive. In the last year I've had 5 PET scans, 1 ultrasound, and at least 3 x-rays trying to find the source of the pain. It took my brave MO saying that I'd showed signs of a compression fracture in my last MRI, and that maybe, just maybe, I oughta have another MRI.
I have found that when you put pressure on a certain part of my spine (like when I'm trying to lie flat), it feels like my gallbladder is fixing to blow up. Mystery solved.
MO gets the results Friday morning, and is so moved that he walks on over to the RO's fiefdom to say "Lookee here." I get a phone call to show up at 2:00 for consultation and planning. I don't need any surgery (yet, I think, will be getting a second opinion), but I do need radiation to stop the disintegration. We are starting Monday at 3:30. These are the good parts of cancer treatment in Tinytown. When the monopoly decides something is going to happen, it does.
You can ask for a softer surface on the imaging table! I tried going full flat, but I never use pain meds when I have to drive to an appointment, so I was not prepared for how excruciating lying completely flat on a hard surface would be. It was BAD. So, after crying a whole bunch (me, not the techs), they put a resilient yoga type mat underneath me, and placed a pillow on top of the head positioner. I've also arranged for transport so I can be medicated.
I am so looking forward to any sort of relief!!! The Navelbine seems to be working elsewhere; my hip has not felt this good in a while.
That was a long answer to a short question, wasn't it? What is the answer from your scan? Are the TMs really jumping (double drat)? Is the swelling behaving?
Jennifer
0 -
Crap!!! It seems we are all struggling right now.
Becs, I am so very sorry about your progression. Not fair at all and definitely not for someone who is 37 1/2 years old. I hate this stupid disease! Even though your Navelbine treatment is over, please keep us updated as to how you are doing. We care about you!
Fran, when you say swelling in your right arm, is that past lymphedema returning? Isn’t it annoying to have to live by following your TMs?! I have had to do this for the past 11 1/2 years, as they have always been the first indicator of progression. It’s just hard - ugh. Keep us updated this week and I’m praying for good scan results.
Jennifer, I didn’t hear from my MO this week, so I’m calling again tomorrow morning. They usually respond timely, so I’m not thrilled with them that they didn’t call. I just started cycle 4 of Navelbine/Herceptin, so I was thinking I wouldn’t start radiation until I finish that cycle anyway. I’m thinking you can’t do chemo and radiation at the same time, but I’m not positive on that. Are you stopping Navelbine while you do radiation? I’m so glad you have found the culprit of your pain and hopefully can get relief very soon. As I’ve heard several times before, it’s like we are playing whack-a-mole with this cancer. One issue gets under control and then another pops up. I need to ask MO what test we will do next to see what other bone mets may exist.
Sending hugs to all this evening. 💕💕💕
0 -
SS,
Navelbine plays well with radiation, unlike Doxil. Tomorrow, I will be getting chemo at 1:00 and radiation at 3:00. What a fancy cancer day for me.
Here's is what I don't understand. RO made it very clear that radiation is only offered on a palliative basis, for pain. But, what if I have a lesion that is causing no pain but is very active? Wouldn't it make sense to utilize the radiation to extend the "life" of the chemo? I understand that we can't run around zapping everything, as there's a life limit to how may rads one can have, but I am thinking that it could be a bigger tool than it is now. This bout of radiation I will be doing is the most aggressive I will have had since early stage diagnosis. Ten sessions, covering most of the thoracic spine.
I'm scared of side effects, but looking forward to pain relief. I've been hostage to pain for a year now, and would like as much of my life back as I can get.
0 -
Jennifer,
I am going to call my MO tomorrow morning and hopefully start getting some answers. I have never heard that radiation is palliative only. I thought that they zapped the lesions and killed them. That is something I will definitely ask my radiologist when I get a chance to talk to him. The neurosurgeon I went to never said that either, although I didn’t specifically ask that. Now that you said you can do Navelbine and radiation concurrently, I want to start soon. I’ll let you know what I find out - when I finally get a call back!
0 -
SS,
Go shake that tree! I had to. Friday, I hadn't heard from the MO's office, so I called them and said that I was just so darn eager to get started. The receptionist hemmed and hawed a bit, but I got an appointment for that afternoon.
Today I get chemo and radiation. I told Blessed Progeny that it sounded like a superhero origin story. I choose the name "CancerGal" - she may be bald, she may need a walker, but her powers to email and telephone till she gets what she needs are out of this world.
What do you think? Movie series or graphic novel?
0 -
Jennifer - you make me laugh! I vote movie series as I would like to see CancerGal in action slay this dreadful enemy.
Finally got a call from MO’s office late this afternoon. I have an appointment with RO on Wed morning, followed by chemo. Fun day, just like you had today - NOT! The nurse said the delay was due to my MO having to talk to the RO about my case in person (i.e. their offices are down the hall from each other.) It should not have taken that long. I do have your question on my list about radiation being palliative. Does not make sense to me at all!
Fran & Becs - thinking of you tonight too.
After radiation, I’ll be on Zometa too for bone mets. I think it’s a shot. Anyone currently taking that?
0 -
Had round 2 of Navelbine, hair is shedding. Did this happen to you, is it temporary? They said some thing and no I am getting concerned. Thoughts and ideas?
Sherry
0 -
Hi Sherry -
I have not had any hair loss with Navelbine but had read before I started this chemo that it is a known possible side effect. I would be curious to know if anyone else has experienced hair loss on Navelbine. On other chemos I've taken and lost all my hair or had major thinning, my hair didn't start growing back until I stopped the chemo.
Take care and keep us updated on how you are doing.
Hugs!
0 -
Jennifer,
I just met with the RO. I will be having 15 treatments on my spine. He said this is absolutely NOT just analgesic/palliative. He said the radiation will kill the mets radiated and then it will take time for the bone to heal. I can also do radiation concurrently with Navelbine. I’m not sure when we can start as we have to get insurance approval first for the scan before they do the radiation.
So, insurance approval process will be started by the nurse today. I feel better having a plan. Now I’m waiting for chemo and fluids.Then I’m going home to rest!
Hope everyone is having a pain free day (if those really exist!)
0 -
SS,
15! Those must be some huge mets. Oy, the pain you must be in.
My MO would agree with yours. I think he was referring to what is "standard of care" and what insurance would reimburse. I get the feeling, in further talks with him, that he is a great believer in radiation to halt tumor growth, whether it is causing pain or not.
I asked him what caused the pain relief, as the radiation doesn't remodel the bone architecture right away. He said there are two reasons: 1. The tumor stops creating micro fractures in the bone with its growth. 2. The tumor also has a weird way off pH balance that causes bone pain.
Off to treatment 3. I've been using our town's ADA transport, as I need the pain pills to be comfortable on the table, but refuse to drive while on them. It's wacky, and one does a lot of waiting, but what a nice service to have. They take you door to door.
0 -
Hi Ladies - Just thought I'd check in. The good news is that I have been doing better with Navy Bean side effects in my third month of treatment; the bad news is that I think that Navy Bean is failing me. I have had two sets of rising tumor marker results; due for a scan next month, but will be un-surprised if we see progression. Sigh. MO says we might try Verzenio next (alone, since I will have already failed Faslodex/Ibrance combo and 2 chemos).
Beccs, very sorry to hear of your progression.
Sherry, I have had some hair thinning with the Navelbine. For me, has been cyclical -- noticed the hair coming out during my "off" week of my 2 weeks on/one off cycle.
I have so had it with cancer. Hugs to all, Lisa
0
